As bad as this letter is, my major problem is the misunderstanding that is behind it and the sexism and arrogance behind it.
I am also shocked at the fairly public display of it. I mean, it is one thing to pass it around in the cubicles (pre-widespread use of Internet), but to have on bulletin boards is brazen. It seems to reflect an assumption and same opinion of those in CDC. (I am sure a few individuals felt differently at CDC, just quietly so, and obviously not those in power to have influence over CDC research into the disease.)
Making fun of patients you think have a psychological problem is likely not uncommon. I mean, comedians sometimes make fun of sick people, such as "retarded" people.
I have had close contact behind the front doors with detectives. You should hear what they say of victims and suspects. It doesn't mean they don't care, it just means they have to deal with challenging situation and coping includes humor. You can't be serious every minute of every day you work in a difficult job.
Heck, we make jokes here about some who believe it is psychological. Some of these jokes border on calling him the devil. Of course, this is from a patient group which is using humor to cope with a difficult situation.
And I am a news reporter. The things said in editorial meetings, including jokes about those in the news, are best kept in the editorial meetings.
I know, CDC didn't have difficult situation. But the flood of people contacting them about the illness likely did cause a difficult work situation. So the erroneous thought is the problem behind this letter. And that error is based on sexism and arrogance and of course, the invisible nature of our symptoms.
If only our pee was blue.
On another note, some have commented here about the difficulty in getting patients to show up for advocacy efforts. We thought this might be because of the difficulties people have because of symptoms.
But some posts on this thread brings up another issue. Notice how patients put forth a lot of effort in trying to get help from CDC. Makes me think of the multiple doctors I went to, contacting insurance company trying to find a knowledgeable doctor, then haggling with the insurance company on claims (I couldn't even do this. My mother had to do this for me. But she told me of the hours she spent trying to get the claims straight with them.) I remember trying to learn about all the supplements I needed to take. And the trips I have to make to the doctor, in addition to trying to keep up my work and do some household duties. I also remember having to take medicine or supplements when I wake up, when I eat breakfast, between meals three times a day, one right before the meal, another right after, some with supper and some when I went to bed. It took me an hour to fill up my little pill container.
I think the problem with patient activity in advocacy efforts is not just the symptoms and lack of money, it is the extra load we have to deal with. It's like having a car starting to have trouble right as they lay you off at work. That is not the time to start remodeling the house.
Tina
